Today’s post is by an old friend. We were acquaintances long ago but now, through social networking we have forged a new bond. She is a gifted writer and the mother of an 13 year old son with high-functioning ASD. She is starting to find her voice. So today, I’m giving her my forum to tell a tiny piece of her story.
Deb is a newly single mother of two making her way through the thicket of parenting two boys, a 13 year old son on the spectrum and an 11 year old neurotypical son. The family lives in Northern California.
My son was somewhat atypical in his presentation of AS (Autism Spectrum) characteristics and indicators. As we know now, “typical” is kind of a useless term on Planet Spectrum, but we still search for some way to describe, organize and address the experience.
At bedtime, we would read out loud to both kids, who shared a room, sing some songs, then kiss them and slip out the door. “Spencer” would then quietly sing, hum, talk, and recite dinosaur names. When sleep did not result from this, he would suddenly shout, “MOM!”
Our room was right next to his, but he couldn’t tell how far away someone was if he couldn’t see them. The only answer to that was to bellow. Irritably, we would tell him to be quiet and go to sleep. Another bellow and we would get up, tuck him back in and hear more talking and singing. Next, he would appear at our bedside, not sleepy.
We tried fixing him some warmed milk, and it seemed to help. After the first week of the warm milk protocol, we simply taught the then 8 year old Spencer to pour and warm a mug of milk, drink it, and put himself back to bed.
One night, after several hours of up, down, milk, bellow, I found myself feeling frustrated, angry, snappish and terribly guilty about my lack of patience and tolerance for my child. I got up, marched Spencer to the kitchen table, and plopped us down into chairs. I was so tired of trying to come up with alternatives, accommodations, work-arounds, and ways not to rock the boat that I was done.
I decided to be direct. I took a deep breath and said, “Why can’t you sleep?”
“Mommy, it’s hard to sleep on a full mind.”
I was immobilized by the pure, honest, distilled clarity of that statement. Inside the mind of our kids, there is no fine tuner that allows them to choose which stations to play and which to block. Those stations do not go “off the air” at 10 pm. Just because we’ve read, sung and turned off the lights, the broadcast doesn’t stop. The humming, singing, reciting, and repetitive physical behaviors are tools our kids are using to find a focal point in the haze of information tumbling across the screen of their attention.
In reality, he would eventually sleep because mammals always do. It seemed less dire when I realized that lack of sleep would not be fatal to him. We stopped the big, energetic power struggle of “get in bed and be still,” and found ways for him to self-soothe.
I placed a radio, books, a tiny book light and all the favorite stuffies near Spencer’s bed. He had permission to get up and make one mug of milk each night independently. Once the rigid power struggle and thorny resentment fell away, bedtime lost its battleground status.
Spencer is thirteen now. We still have restless nights, but medication has been an extremely helpful “Mute” button. The late-night bellow still happens; only now the sound of Spencer’s post puberty, man-voice is comparable to a Maine foghorn. He still can’t tell how far away I am if I am out of sight. I still have restless nights. For parents with kids on the spectrum, a full mind is not unusual.
Pass the milk.
I had no idea that sharing my stories in this forum could really make an impact. Truthfully, I don’t know that many people and “spreading the word” so to speak, seemed a daunting task. Nevertheless, I chose to press forward. In the process, in this short time, I have discovered so many new, understanding, and supportive parents and re-met old friends by discovering the new bond of autism. I am lucky and grateful for all these new friendships.
Thanks to Deb for her insight. “Spencer” is in his teens and so Deb has a world more experience in ASD than I do, just like a lot of you out there. It’s great to get this kind of perspective and to encourage someone new to share their experiences. ]